Medical conditions won’t wait for the pandemic to pass. It’s time for the government to support medical research charities
‘When I got my diagnosis, I always tried to keep positive and say I would beat this. As I got sicker, I knew the only hope may be a research trial. I heard about MND SMART and was so excited. It was like a man falling off a cliff being thrown a lifeline. Now that lifeline has been cut from me because of Covid-19. The irony is Covid-19 may actually kill me because I can’t access a trial! How much more brutal can this get?’
The words of Matt from Plymouth, living with Motor Neurone Disease (MND).
As Dr. Timothy Harrower, Consultant Neurologist specialising in MND puts it, he ‘like many patients might well have been recruited during the lockdown, but now is probably outside the recruitment criteria given the potential to have progressively worsened over the last eight months, which is very disappointing.’ The often rapid progression of MND – with most living only two years after diagnosis – leaves a short time window for patients to successfully participate in a trial.
Tracy Thomas, Care Network Co-Ordinator and Lead Clinical Nurse at the MND Association sees patients like this each and every day and finds it ‘very hard constantly telling people sorry no trials yet because of Covid-19’. Since England locked down on 23 March, it has been a challenging period for medical charities such as the MND Association; they’ve seen fundraising dry up, events cancelled, and staff told to work from home. Despite the MND Association alongside 150 other members of the Association of Medical Research Charities (AMRC) forming the backbone of the country’s medical research, trials to find treatments for terminal conditions such as MND have been halted in search for a vaccine for Covid-19. MND is a fatal condition in which motor neurone cell death eventually leads to respiratory muscle failure, making individuals with the disease extremely vulnerable to Covid-19. Closing down research trials to prevent the spread of the virus is necessary. But, it’s the social, economic and mental (as exemplified by Matt’s experience) ramifications of locking down that charities have been left with. It’s salient that as I write this England is about to enter a second month-long lockdown on Thursday 5 November, meaning research will need to continue virtually.
With registration to participate in trials now taking place predominantly online or by telephone, the MND Association has seen slightly higher registration numbers.
Although, this is foregrounded by a depletion in the numbers of people being diagnosed since the start of the pandemic.Whilst online services have seen individuals talking more openly about their experiences, registration has been more of a frustrating endeavour for some. For those that use eye-gaze technology to type, the online registration process can take hours, so users of these technologies have had to rely on others to help. Thankfully, clinics are now slowly re-opening, with face-to-face appointments prioritising newly diagnosed individuals. The disparity between Covid-19 measures implemented in countries across Europe is notable; trials of the therapy TUDCA, a molecule which camouflages part of the motor neurone death cascade, have been taking place in some regions like France, Germany and Belgium, but not in the UK. This lack of congruency is an obstacle in co-ordination of international research. However, for the first time, the International MND Research Symposium is taking place online from 9-11 December, making research coverage more accessible.
The MND Association is not government-funded, meaning its financial support comes from fundraising by the public, volunteers and legacy donations from wills.
Normally, the London and Brighton marathons would be a great source of support.But we have seen these events go virtual. The MND Association have been launched their Mission 5000, supporting the 5000 people living with MND in the UK by 5000 miles of running, walking, cycling and everything in between. The MND Association Research Programmes and Partnerships Manager, Kirsten Kelly said that adapting this mission to a socially distanced community had led to more innovative fundraising contributions. ‘One lady knitted a mile. Another did a roly-poly every day. A gentleman blinked 40,000 times – the equivalent number of steps to a marathon. A lady sang 5000 lyrics of songs that had special meaning to her, posting them on YouTube every day. We’ve seen some incredibly touching contributions’.
Such solidarity within communities is powerful. Yet, it should not be down to the individual living with a disease like MND to shift the goal post further forward in a public health crisis.
The AMRC spoke to all of the 150+ of its member charities and asked how the pandemic was affecting them. The evidence suggests that all of these charities combined have seen a deficit of £310 million since the pandemic hit. A letter was written directly to the PM asking for financial help, which is especially important since the AMRC makes up over a quarter of funding for life sciences research. As yet, there has been no reply. Despite this, the AMRC are running a Twitter campaign under the hashtag #ResearchAtRisk to raise awareness about the impacts of the pandemic on medical research. Shockingly, the AMRC states that ‘40% 0f early career researchers have considered leaving medical research due to charity funding concerns’ since the virus entered the UK. Research conducted by charities like the MND Association is lifesaving, without which wider medical research could be set back by decades following the pandemic. In the words of Dr. Brian Dickie, the Association’s Director of Research Development, ‘MND is not an incurable disease, it’s an underfunded one’.
Where there has been a paucity of funding, volunteer support has been unwavering and in the words of Colin Morris, Treasurer of the Exeter and East Devon branch of the MND Association ‘we have been able to distribute Quality of Life and Carers Grants, which seem more important than ever – we know MND won’t wait for the pandemic to pass and nor should we when it comes to helping those affected’.
It is not a question as to whether the MND Association needs government support; government support will be the sine qua non of improved quality of life for those with MND.
Research trials for motor neurone disease include the ALS Reproducible Antibody Platform (ALS-RAP), Modifying Immune Response and Outcomes in ALS (MIROCALS) and Project MinE to map the genomes of at least 15,000 people with MND, not to mention the clinical and healthcare studies such as COMMEND looking into the effectiveness of Acceptance and Commitment Therapy in MND.
For more information on these trials, please visit https://www.mndassociation.org/research/about-mnd-research/clinical-trials/treatment-trials/
ABOUT THE AUTHOR
Scarlett Parr-Reid is a BSc (Hons) Medical Sciences graduate from the University of Exeter, currently reading for an MSc in Science Communication at Imperial College London. She is a Freelance Science Writer, Podcaster and Tutor. Scarlett has been a volunteer with the MND Association for the past 2 and a half years, as the Regional Newsletter Editor for the Exeter and East Devon branch of the charity. Throughout her time as a volunteer, Scarlett has spoken at the MND Association National conference, collaborated with the Exeter Medical School to run awareness events and seminars for students and organised the Walk To D’Feet fundraiser, introduced by the Mayor of Exeter, Peter Holland. This year, Scarlett was awarded the College of Medicine and Health Charitable Work Citizenship Award for her valuable contributions to the community.